Still Sick, Trying Gluten Free And Pregnant

[Shaunacey]

So I am desperately in need of some help. I have not been diagnosed with anything yet (except for IBS a few years back) but I have been having some serious stomach/digestive/intestinal problems for about 4 months now. However, I have been having stomach issues for about 10 years now, when I entered University.

My Story: On and off for years I was in and out of doctor's clinics with severe abdominal pains, gas, diarrhea. It would come on as an attack, last a few hours or days, weeks, but then I may be fine for a few months. I think I had an X-Ray and ultrasound in that first year, but they did not show anything. Years go by. I find that sometimes when i eat fatty foods, fast foods or a big meal at a restaurant I may get sick. Sharp pains, followed by diarrhea and then tired after.

Today: So for 4 months now I have been having bad stomach pains, excess gas, daily diarrhea (I have not had a normal BM in over 4 months) lots of headaches, and bloody stools. I had an episode like this 2 years ago, lasted 2 months (without bloody stool) but then it went away. I was supposed to get a colonoscopy, but couldn't because i was pregnant by time the appointment came. So that is part of the dilhema now. I am 7 months pregnant. Doctor wants to send me for a coloscopy and endoscopy to check for a few things, including celiac but I have to wait until baby is born. So over 2 months ago I decided (with doctor's permission) to try a gluten free, diary reduced diet. I seemed to feel better after a few weeks, but still no where near normal.

So now after 2 months, I still most days get pains. My stool is somedays softer, but mostly diarrhea and comes with sudden pains and I have to run to the bathroom. What it not getting better is the blood in my stool. I may run to the bathroom, have very little diarrhea but there will be alot of blood when i wipe, the toilet will be red and there may be blood clots too. I am starting to think this may be something else and not Celiac?

Sorry for the long post. I guess I am just frustrated that because I am pregnant I feel there is nothing anyone can do for me, and I may be avoiding gluten for nothing. Anyone have had anything similar or have any advice. I do have another doctor's appointment monday, but I am not sure what he can do. Thanks

[rlhyzy]

There are blood tests that can look for certain antibodies that would be elevated if you have celiac disease. I am pregnant too and know that blood work is done periodically during pregnancy. I would suggest asking your doctor about these blood tests. Obviously it is not an invasive as an endoscopy. If your results come back elevated, the next step to a celiac diagnosis is an endoscopy with a small intestine biopsy, but I know that would have to wait until after delivery.

I hope this helps if even just a little bit. I was very ill until my celiac diagnosis and got great relief after a positive diagnosis. If it is not celiac disease that you have, I hope they figure it out quickly for you.

***I've included some information I got from this website: Open Original Shared Link about which blood tests I have been referring.

"There is a particular series of blood tests called the

[gf-soph]

Fresh red blood could be from piles or fissures, but clots may have formed higher up. You definitely want to get checked out thoroughly for the blood. It could be crohns disease, polyps, I think bleeding ulcers etc. A colonoscopy and endoscopy sounds like a good idea to rule these out, you don't want to leave it. I'm sure it's really frustrating not to be able to do the testing immediately!

Since you have been gluten free for 2 months, the blood tests are unlikely to be helpful unless you go back on gluten. There is plenty of advice here about how long you should go back until the tests are likely to be positive.

The only thing I can think of for now is celiac DNA testing, but I'm not sure that even that can tell you 100%

I'm not sure what your waiting times are like in Canada for specialists, but it could be worth getting a referral now so that you can meet the gastroenterologist and get on their books, and book in the scopes at the right time after delivery. It would be better than starting the process after delivery if there is months wait for the procedures? They may also have a better idea of what they can look into at this point.

I'm not sure if it's been checked yet, but you should at least get your iron/B12/folate levels tested, as blood loss could cause you to be deficient. They could test your CRP which is a measure of general inflammation, it might indicate towards crohns if very high. Can't think of anything else right now, though I'm sure others will have more ideas for you.

[tarnalberry]

It's tough - while your pregnant, your stools WILL be softer, and you may experience "urgency" (particularly when the baby kicks your intestines!). But yeah, you're kinda on hold, while you incubate. But even if you're not celiac, going gluten free isn't "for nothing" right now, because it's the one thing you can do that doesn't have (health wise) adverse consequences (if you eat healthy, of course). Hang in there, and if you can get the gene test, might as well go for it. It won't really rule it out (most places don't actually test for all the related celiac genes) but it'll give you something to go on.

[Shaunacey]

It has been tough, but just hearing others supports helps. I guess I just thought that if it was gluten or diary that was hurting me I would feel better than this now. And I figured that getting the blood test done now wouldn't be better accurate because I have not been eating gluten for 2 months now. I am hoping the doctor next week will ask me to give a stool sample, so then at least he can see how much blood is actually there. And I was planning on talking to him soon about making sure I see whoever is going to perform the scopes, that they can get me in as soon after the baby comes as possible. So I am still going to stick to gluten free for a few more months, because I know I eat better without it. I was always planning on going back to eating gluten a month or 2 before the tests, so they will be accurate.

This is my second baby, my first is only 16 months, and my stomach/bowels were really great during that pregnancy. I was able to eat more and alot more foods without any problems. I just know that my daily very watery/muscous and then half the time bloody are not normal for pregnancy or anyone.

I guess its mostly the daily blood in the toilet that is starting to worry me and make me doubt that this is a problem with gluten. I doubt my doctor would send me for the gene test and I know I wouldn't pay myself.

Thanks for the support everyone. I really hope that I have this all figured out by the end of this year. I have always felt like my insides were so "diseased" or unhealthy. Well except for my uterus, which seems to work great. I guess I will continue to hope to feel better and wait until this baby comes for some answers.

[Loni2Shoes]

I know how you feel. I gave birth to my son 7 months ago and developed a horrible upper abdominal pain on my right side during the last four months of my pregnancy (diagnosed as costochondritis). It was bad enough that I would have to work with ice packs on my ribs and had to (permanently) give up normal undergarments. It feels like NO ONE can help you when you're pregnant, and as a consequence, that your ObGyn just isn't sympathetic. It's only now that I am beginning to suspect that my trouble may be related to Celiac Disease -- or at the least, gluten intolerance -- which would explain why I felt so terrible even after a daily lunch of sliced turkey on whole grain bread with mustard (I was trying to cut out fat, thinking my problems were gall bladder related).

From what I have read, IBS is a frequent misdiagnosis for people with Celiac, so I think you're probably on the right track. I myself did not experience diarrhea, but I do occasionally get bloody stool (which I previously assumed was due to childbirth-induced hemorrhoids), but celiac symptoms are widely varied, and diarhhea is one of the common ones. Another one to consider is whether or not your stool "floats" as that can be an indication that you are not appropriately absorbing fat. I'm not sure how that would relate to diarrhea-based stool, though (if you could even tell, I mean).

Although you mention your first pregnancy was normal, it's worth noting that Celiac often presents in times of bodily distress, and I can think of no greater bodily distress than being pregnant!

If you can afford it, you might consider the saliva-based DNA test mentioned by gf_soph. Because it's based on genetic markers, it won't be affected by your recent avoidance of gluten.

Good luck. My heart (and stomach! and ribs!) go out to you.